Jimbo,
My last minute advice would be to start eating everything you like and lots of it.

Eat like crazy. Eat anything and everything you can imagine. Once radiation starts to affect your taste buds and salivatory glands, eating becomes more difficult. Things wont taste the same and it will become a struggle. So eat lots and lots now so you do not have regreats.

Have you had a hearing test? I assume you are getting Cisplatin which has a nasty side effect for some (me included)resulting in permanent hearing loss. I didn't have a baseline hearing test so it's impossible for me to prove that Cisplatin was the cause even though I know it was.

I would also ask for a baseline TSH as the radiation often destroys/damages our Thyroid leaving the "experts" to guess at the proper amount of meds to return us to normal.

Also start using the trays now and continue throughout your Tx and for the rest of your life. I did miss a few nights during and post Tx but wear them as many as possible.

Just listen to the ones saying eat while you can. After 3 years I still don't get hungry or have the abilty to have any taste at all except for the 1st bite. It;s strange to never feel hinger pangs and have the desire to eat. It's a force yourself that you will have to do and usually you will want to quit after a couple of bites. Good luck and fight, fight , fight this thing.

Jimbo,do you had a peg tube? Some have made it through without one but most have needed it as swallowing becomes very difficult or (in my case) impossible. I could barely swallow water and had to pulverise pills and take them through the tube. After treatment you may need to see a speech therapist to relearn swallowing as the muscles forget how.

I agree 200% with a baseline hearing test. Carol had carboplatin instead of cisplatin due to the well known issues regarding hearing loss due to cisplatin. Carboplatin has some issues with hearing loss but not like cisplatin. She lost her ability to hear out of her left ear about 2 weeks into treatment. (She had a right ear mastoidectomy when she was 14). I purchased one of the over the counter AMPLIFYING devices, as a short term hearing device until she was able to have a hearing test. It's torture enough having to fight OC but to have hearing loss added to the mix? Unfortunately, Carol recently had a hearing test and she was told there is no correlation of hearing loss and the use of Carboplatin.

Having a baseline hearing test along with a baseline TSH should be pre-requisites prior to treatment of OC.

Linda

I've got the "eat everything in sight" down pretty good, so no worries on that end. Thanks for the advice on the hearing test and the baseline TSH, I'll follow up on those tomorrow. Cheers

Hi Folks

Just finished the 1st week of Rads and 1st of 3 cistplatin treatments. Everything fine so far, only complaint is the almost-constant bloated feeling. I think its most likely from me eating as much as I can and all the water I'm taking in. I stayed in the hospital for 2 nights during the chemo treatment. They wanted to keep me on an IV drip before and after the chemo to flush it through the kidneys. Not to much to complain about at this point, though I do realize these are early days indeed. Just wanted to say thanks for your support and encouragement!

Well I will tell you my experience. I had 10 hour surgery, and am almost to the end of 30 rounds of radiation, only 12 left, so i guess a little over half way through, but i like looking at it as almost done. Not everyone is the same, and I have had people tell me I will be able to get through just fine without a peg tube, and boy were they wrong. I wish i would have gotten the peg in before starting radiation.
Starting about a week ago, I wasn't able to eat or swallow anything, and I went 3 days with nothing coming into my system till they put a PICC line in and started giving me 2 bags of liquids everyday.
I am scheduled to have the Peg put in on monday the 28th, and let me tell you, that day cant come soon enough.
I have mouth sores on my inner lip, and on the entire left side of my tongue, because that is the only part of my real tongue i have left, also sores around the entire mucosa of my throat. They said they wouldn't show up until the 3rd or 4th week, but mine started to show up before the end of the first week.
2 weeks ago the thick nasty saliva started showing up and about a week ago I started vomiting about 5 times a day.

I am hoping none of this happens to you, but you may want to take precautions to be on the safe side. The minute you think you will need the peg, don't second guess yourself like i did, and just get it in. I regret not letting them put it in before my treatments, but i was nieve.

Hope you sail through this a lot better then i did. But neck and inner mouth radiation give you some pretty bad side effects.

Good luck and stay strong.

Jim, week one finished without any significant problems. So far, so good. Sorry you feel bloated from eating so much, but keep it up. Eat as much as you can and drink lots of water. Being hydrated will make a big difference in how you feel, so push the fluids. Please keep checking back with your progress and questions. Remember everyone is different and some people struggle alot more than others.